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Author
Topic: How has HIV changed you? (Read 9851 times)

Many of us at one point or another have struggled with news of being infected, what that means to us, our families, etc...and have tried to figure out what we should do with our lives now.

Anybody have some good stories to share regarding what they have done since becoming positive? Have you changed careers? Gotten married? Had children (or adopted)? Volunteered more? Created something special (something you may never have done if you weren't positive - for example, a community garden or wrote a piece of music/play)?

Do any of you have special stories of times when you just decided you weren't going to take the BS any more...and stood proud to advocate for yourself as an HIV positive person?

This is a little self-serving - I'm preparing a presentation for newly infecteds and thought I might included a few snipnets of stories as motivational pieces. But, this forum seems like an ideal place for those who have been positive for a while to tell their story and maybe give some hope and inspiration to folks who are still struggling with their diagnosis.

Having been HIV Poz for 11 years now I have finally realized in the past year or so that I`m not ashamed of my status. The shame is in those who choose to judge those who are. My friends and family have know about my status from the begining. I have on a small level educated them about the virus.In the beginingIi was angry, bitter and convinced I only had a few years to live. I know now with the advancement of HARRT medication I have a chronic illness that is managable and I can and will live a long life. As long as I take care of myself and I am compliant with the meds, there is no reason that life can fullfilling.

Now that I`m almost a 1year and 2 months in remmission with HIV related cancer. A two time survivor, I`ve decide to go out back int he world and give back to the comminutiy. I plan on meeting with a organization here on Long Island known as "Ligaly". Long Island Gay and Lesbian Youth. A center for the young community that have a place to gather and feel safe. I would like to educate the youth on HIV. With the latest stats from the CDC showing an increase in the Virus with the 30 and under crowd, I`m worried that we about to enter a new wave or epidemic with the Youth. I look forward to sharing my knowledge as a LTS and hopefully help them inderstand that HIV is still relevant and very dangerous.

Great thread, thanks for starting it.ANGEL

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" My Body Might Be Broken, but My Spirit and Soul are Alive and Well " my personal mantra

HIV has made me appreciate everything and everyone around me... I am more aware how fragile life is... it has brought a more spiritual, intellectual, experience and has humbled my existence. I do not take anyone, anything for granted... I now understand life on many levels...

What dixieman said AND, I now live my life all the way out there. No holding back, no wincing behind the scenes. I love life every day, and laugh big, play big, and mince no words. Our Dame Jan, used to have this really cool byline that spoke to ending one's life sliding into home exclaiming "Whew, what a ride", or something to that effect. That is how I'm living it.

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

Changed me? Well, truthfully, I have nothing to compare it to other than my childhood. I was infected when I was a teen in the early 80's. I think the fear of being "outed" with it and almost dying from it a few times certainly affected my attachment to people.

It didn't stop me from going to school and getting multiple degrees.It didn't stop me from pursuing a terrific career that I am passionate about.It didn't stop me from dancing with a company and becoming a choreographerIt didn't stop me from traveling and exploring around the world (above and below the water)it didn't stop me from falling in love with a wonderful person, only to hold him as passed on 2 1/2 years later (just a little over 3 years ago)

I've always been curious, passionate, creative and sensitive as long as I can remember. (oh yeah, sarcastic, stubborn and a little weird and childlike)

AIDS, for me, just is. It kicks me in the butt every once in awhile but I just deal with it. I know I have wonderful support around me in my life, including here on this forum.

I can't really say hiv/aids has made me cherish life more or altered my approach to life.

However, since I received my aids-related PCP diagnosis I have led a quite normal life. I have gotten married AND stayed married since then. We can't have children so we have foster children. I have been working full time since I recovered from PCP and got on meds I could tolerate (which took 5 months).

Volunteer work is something I've given up because I was too tired to work and continue volunteering at the same time.

HIV/AIDS has seriously changed my life; and not in a good way. However, I have taken away a motivational/inspirational lesson from it all.

Twice in two years, I was hospitalized with pneumonia (first time was PCP) and was told I was going to die. That changed a lot about how I felt about my life - it made me GLAD to be alive! It also weakened me, forced me to quit work, put me into poverty and onto disability. It then took 10 long years of sickness and med side effects, going from 28 pills a day down to only 7 now, before I ever reached an undetectable viral load.

Twice AIDS has taken a long-term (10 yrs) partner from me. My first partner died (5/25/94), less than two yrs. after we got our HIV/AIDS diagnoses, which forever changed my future plans. Almost exactly 14 yrs later, my second partner suddenly took ill this Feb, was admitted to the hospital (Mar 1) for 50 days, diagnosed with HIV/AIDS and non-Hodgkins lymphoma, and passed away back in our home (5/1/08).

However, through all the grief, depression, despair and desperation (losing my last partner has already cost me the car, some of the utilites, and soon the house), I learned to be so much more appreciative of being alive (even if my health isn't the greatest) and having my friends.

I also learned what I consider to be the most valuable lesson of all - death is the ONLY problem that can't be fixed, or at least made better. Every other problem I've had has eventually been improved by some patience and some effort. Sometimes it's taken a lot of hard work (which is never fun when you're puking from the meds), and sometimes the patience (waiting for the solution to work out) has been a hard pill to swallow.

Taking this lesson to heart, tomorrow I'll take my morning meds, try not puke, and spend yet another day (there's the patience part) trying to find a new place to live (and there's the hard work) before the bank, the taxman, or the hospital comes to claim my late partner's house and toss me (and my dogs) out onto the streets.

Sorry, having this deadly, sickening disease hasn't made my life any better or given me any good stories to share. What it did teach me was that life can be very short, so you better enjoy and appreciate what you do have; and as long as you're not dying today, some effort tempered with some patience can make anything else a little better.

So far not much. My outlook has always been pessimistic and cynical, regardless of hi. Due to my main opportunistic infection - TB - I have lost a great deal of weight. I was about 195 pounds, went down to maybe 145, now up to maybe 170 (I'd like to stop gaining). Oddly enough I think I look much better now than when I was chubby.

HIV has made me appreciate everything and everyone around me... I am more aware how fragile life is... it has brought a more spiritual, intellectual, experience and has humbled my existence. I do not take anyone, anything for granted... I now understand life on many levels...

I couldn't have said it any better. But I also agree with Matty too, it has made me more understanding and a nicer person.

I was fired from my state career for complaining about years of public supervisory harassment to “straighten up, get back with the Roman Catholic church, and get married,” and “not touch (other people) because (I) might have ‘the AIDS’.”

Hi Everyone, well i first found out that I was infected when I went to join the Army and it really blew my mind,,, I had been clean (OFF DRUGS ) for 8 yrs but right before I got the news my then Wife turned me on to Crystal Meth so I used the news of being infected to use more drugs thinking that since I was going to Die anyway I would go feeling what I would call GOOD and it took a long time ( 1988 to 2002 ) to realize that I was trying to Kill myself,,, I ended up sick with a T-cell count of 6 and a Viral Load of 400,000+ and PCP pneumonia and after I was released from the hospital I just got into the state of mind that I did not want to live any more so I took about 100 pills and shot up a gram of Crystal meth and I walked out of my Apartment,,, that's the last thing that I can recall because I awoke from a Coma 14 days later in a hospital where they told me that it was a Mircale that I came out of it and I will not Lie I was really Pissed off that I was still in this World but after a few people and my daughter kept telling me that GOD had a purpose for me to live I just gave it up to GOD,, I also have to let you know that I was wanted by my PO so I was facing some Time in Prison which I know was also another reason why I deceided to go into a Rehab Program which I thank GOD I did because I just Celebrated my 6 years of being Clean ( OFF DRUGS ) and for thwe last 5 yrs I have been Undectable and my T-cells are between 350 and 500 I do not know why they keep going up and down but I would guess it's because of a lot of Stress that I have been going through,,, I now want to live and I have hopes that I'll meet a woman that will Love me... I have been trying to date only women that are HIV+ because I'm scared that I might infect her,,, my Ex-wife Thank GOD never got infected and we did have unprotected sex which to me is another miracle...So there you have it a quick version of my life with HIV/Aidsthank you for listening to me as always your friend PRMike

Made me realioze that I am a lot stronger than i ever knew I could be. And also made made me quickly prioritize what is important and move away fast from those things that are not.

Mike

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Anybody have some good stories to share regarding what they have done since becoming positive? Have you changed careers? Gotten married? Had children (or adopted)? Volunteered more? Created something special (something you may never have done if you weren't positive - for example, a community garden or wrote a piece of music/play)?

Do any of you have special stories of times when you just decided you weren't going to take the BS any more...and stood proud to advocate for yourself as an HIV positive person?

This is a little self-serving - I'm preparing a presentation for newly infecteds and thought I might included a few snipnets of stories as motivational pieces. But, this forum seems like an ideal place for those who have been positive for a while to tell their story and maybe give some hope and inspiration to folks who are still struggling with their diagnosis.

Well, my first year with HIV was downright terrible. I had just started a new job the day before I got the news on 11/1/2006 . My bf tested positive also 2 weeks later, diagnosed not just HIV but with AIDS despite a neg test 6 months earlier. I became sufficiently depressed to go on disability. I lost the new job while I was on it - the first time I had lost a job involuntarily.

Fortunately, I was able to rebound. A few months after, I went back to my old boss with the news that I wanted back in. At first he offered me a contracting job. I said that wouldn't do because I had some health issues, as did my bf, and I volunteered what they were. He understood that we needed to get insurance, so I started working part time at the old company 3 days a week in mid 2007, with full benefits for myself and my bf. Then 4 days a week. And earlier this year I went back to 5 days a week.

No, we have not gotten married yet, though we talk about it.I have gone back to playing music. I played recording engineer for my piano teacher and recorded a CD for him earlier in April.In July my bf and I visited my family in France, and spent a bit of time in Amsterdam and London.

As for someone else who mentioned sex addiction, I think mine will only die with me. The HIV news stopped it only for a few months. But last month on the trip, my bf dragged me to practically every bathhouse around. He prefers to watch, but when I pay the entrance fee and I'm around hot guys, I like to play also, and I had some fun (safe, and with disclosure of course) . I had never visited a bathhouse before my HIV diagnosis, so in that sense I'm certainly not getting any less than before.

You might not want to include that last paragraph in your presentation. LOL.

It hasn't really altered my personality; I was this fabulous before hiv. Seriously though, I suppose it has made me more tolerant of others who also have health related problems, whether that problem is hiv or not. It's also made me much more INtolerant of bigots and other judgemental arseholes. It's made me a hell of a lot more proactive where my health is concerned.

It also miraculously made me computer literate. Never bothered with computers before my diagnosis and I somehow think I never would have.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I was diagnosed 20 years ago this month and can't believe it's been two whole decades since then.

I wouldn’t say that living with HIV has really changed me much. It has however helped me to separate what is important in life from what is not. And that which is not, I no longer waste my time on. Life goes by fast and the older I get the faster it seems to go.

Having said that, the quality of my life is more important to me than the quantity of years I may or may not live. When all is said and done it will be love that mattered most.

I tested pos in June of 87. Yes negative things have happened in my life because of this, however, no matter how bad things seem I remember that it is life. I can't curl up in a ball. I know that if it was AIDS it would have been something else. AIDS has made me realize where me strengths are and what my weaknesses are.I continue to live my life. AIDS is not the thing that tells me how to live my life, it is only a small thing in my life. I believe that as long as I live my life this way I can have a "normal" life.That doesn't mean that I let things slide if I hear ignorance. Like when I started a new job in SW MO. There was true ignorance, things said that I hadn't heard since the early 90's. I spoke out and freely to educate the people I worked with.

Being postive now for 2 years, having HIV has changed me in many ways. I have more frredom now - I don't fear things as much. It has allowed me to experience things that i would have previously set limits to.

not really much has changed since ma diagnosis, except yes it got rid of ma gud wonderful skin i used to have!!!that one 's made me mad!!!summer is here and i just don't know how m going to survive it without ma nice dresses, bare backs, boob tubes!(i got Steven johnson's after reacting to viramune) but other than that really m cool, i've got to be more loving and appreciative to life though. i just think that life is too short not to have a blast!

O no doubt the news of being HIV positive killed me, i died in that clinic office that day, emerged a different person....

No doubt it changed me for the better, i don't go out partying and drinking like i did before, i value my life, the little things i took for granted. Im a much stonger person though, emotionaly, physically, mentally.

i am no longer the same "smile and pretend that everything is all perky and happy all the time" guy... my diagnosis made me more emotionally attached to the poeple in my life, i am no longer ashamed to be me and what i am, I have found that i am unabashedly blunt and i feel as if i am have learned to slowly take care of me as #1 and not make myself second to anyone else ...

I am phoenix and i have finally risen from ashes of my pervious self ...

I've become much closer to my family, and to my friends who are aware of my HIV status. Less partying now, less nightlife, less sex. I go to church more often. I'm more interested in healthcare reform, and I'm more compassionate toward those who are ill. I'm way more liberal than I used to be. When I see the obituaries in the morning paper and don't recognize any of the names, I still see the deceased as more than just "names in a newspaper" --- I see them as individuals with unfulfilled dreams, who are leaving behind loved ones who miss them terribly. I'm a little bit sadder than I once was. I don't particuarly like to see pictures of myself as a child, because I would like to reach back in time, grab that little boy in the photographs by his shoulders, shake him, and tell him to please be more careful as he matures. Oh yeah, and I spend WAY more time in the bathroom.

In many ways the diagnosis was one of the best things to happen to me. Odd enough to say, but in many respects it is true.

I've learned to LIVE more each day and to take more risks in terms of relationships and meeting new folks.

I also don't seem to take much crap from anyone.

Now, with that said, I have to say that there was a year of fear and feeling sorry for myself, while also becoming educated on the aspects of the virus and disease in general.

After my anniversary June 8, I decided enough was enough. I've given up smoking (2 packs a day, now smoke free for 3 months); I've joined a gym again (this time with a personal trainer, and have lost over 15 pounds while gaining muscle mass); and I've started dating again, but seriously.

I would likely have never done that if I were negative. I would've remained "coasting" through life.

There are still challenges (relationship novice), but I'm also improving myself that way, too (i.e. psychotherapy). And there will always be health things over time. It's just part of life for anyone, and not just for those of us HIV+ folks.

HIV is a thief. It has stolen much from me......career, financial security, home ownership, much of my youth, a lot of my health, and a great deal of my heart.

There are some pluses, too, along with all the negatives: I have had some wonderful people come into my life that otherwise never would have. I learned that I am as tough as nails. I am more intolerant of cruelty and mistreatment of others. I am much more politically aware. I have a lot less "stuff" but it matters less to me. When I love someone, I tell them. I don't take people for granted anymore, nor do I ever take good health for granted. Most importantly, I learned the value of gratitude. I am thankful for every day I have been given, for my life that was spared while so many loved ones were lost.I am incredibly blessed. Oh, and I have a cat ! (before, I considered myself to be a 'dog person').

Alan

PS - I will mark another milestone next year -- 10 years without being admitted to the hospital! My last"struggle for life" happened back in 1999, when I was battling Crypto and Giardia, and an Addisonian Crisis that left me in ICU for 14 days. Ask anyone here, HIV has made me VERY AWARE of marking all important milestones (like birthdays!)

« Last Edit: September 09, 2008, 10:14:34 PM by AlanBama »

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Although I'm not quite ready to join the ranks of those who say "AIDS is the best thing that ever happened to me" it has certainly caused me to re-evaluate and re-orient my life in ways that never would have happened if I hadn't contracted the illness.

I've always had a bit of an activist streak, so when I recovered from the worst part of my AIDS illness, that activist streak reasserted itself. When I had trouble finding a support group in my area, I resolved to start one myself. I am getting involved in the local activist groups, too. I am now Secretary and a board member of A Brave New Day, an AIDS service organization. I'm also a Community Advisory Board member of the Medical Monitoring Project, and a proxy to the MS Community Planning Group for HIV Prevention. I also have become a certified HIV Prevention Counselor, and I plan to get my certification as an STD/HIV Instructor next month.

Strangely enough, contracting AIDS has brought passion back into my life. As my therapist commented a few weeks ago, I'm "like a man on fire" as a result of my activities. Recognizing the severe shortage of mental health professionals for helping those living with HIV/AIDS in this area, I have determined to go back to school and get a BSW and then a combined MSW/MPH.

None of this would have happened if I had not contracted AIDS. I would still be sitting at a desk job I hated. While I still grieve for some of the changes having AIDS has brought about in my life, I also am very excited about the new course in life having this disease has now put before me.

Regards,

Nick

PS: I learned I was HIV-positive at the same time I was diagnosed with AIDS, December 2007. T-cells then: 6. T-cells now: 76. Viral load then: 800,000. Viral load now: 100.

1. Getting out of bed....Pulling the sheets over my head. 2. Having endless energy....Being endlessly exhausted. 3. Having an appetite....Forcing myself to eat. 4. Eating food....Swallowing pills. 5. Being happy....Constant depression. 6. Having feelings....Feeling numb. 7. Going out....Staying in. 8. Having savings....Being broke. 9. Good credit....Bad credit.10. Vacations....Staycations.11. Being out of the closet....Hello new closet.12. Wanting sex....Scared of sex.13. Living life....Waiting for it to end.

WOW on 29th june 2007 a part of me died. When the woman told me i was positive, over the next 2 months was complete hell for me, adjusting to having another man in my life was not easy especially as i hated him and he, well loved me to death. This new "marriage" was NOT what i wanted but realised that he was with me now until death so i had to pull myself together and get used to it. I decided that the clock was now ticking faster than normal and my time here had been cut dramatically i decided to quit my job in which i loathed and went to college to realise my dream which is music and i havent looked back i now produce music which i couldnt do before and although my body is still being messed around with by the new man in my life i am mentally and most of the time physically stronger than i have ever been. I now look back at diagnosis day and will in the future look at it as the start of a new life so i have 2 birthdays now just like the queen I now know that from something terrible has come alot of good. I am still only in my first anniversary but in time i want to help others with the virus and let them know life goes on with it inside you